numbness in foot, anyone?

[kulharv]

Hi all,

I have just finished my 4th RTX treatment and a few days later started having pain in my right leg(sciatica?) but what is really worrisome is the numbness in my right foot. My big toe and the adjacent toe are very painful, the whole foot feels numb. The right foot is, temperature wise, hot whereas my left foot is cold. I have also noticed red bumps on the top of my right foot.
I did end up going to the ER and they gave me T3's and scheduled a CT scan of my spine. Then went to see my gp the next day and he said that it was the nerves that were very tender on my foot (can't even light brush the top) so he prescribed me Gabapentin. This has helped at all.

If anyone has had anything similiar, please let me know.

Thanks.

Harvi

[vdub]

I'm really surprised you haven't received an answer to this yet. I'm sure I have seen others on the forum with similar symptoms, but I'm not one of them. When is the CT scan scheduled for?

[kulharv]

hello vdub,

ct scan was for my lower back to ensure that there was no disc problems. It was done this morning and was clear. I am having a bone scan done tomorrow as my foot is getting extremely bad. It is numb on the top with red marks. The red marks/rash is not anywhere else. The pain is no longer tolerable and I am taking percacet every 4 hrs as well as gabapentin. Its been 3 days no sleep!

The ER docs knew me as they attended to me 5 weeks ago when I went in for coughing up blood. They were very helpful and wanted to take a look at the bones. I don't know what it will show but will find out tomorrow.

I haven't seen anyones comments with similar symtoms, so if there is anyone out there, please let me know. i beginning to wonder if the RTX has helped (4 treatments just completed) or if I need more.

Thanks.

[Al]

Hi all,

I have just finished my 4th RTX treatment and a few days later started having pain in my right leg(sciatica?) but what is really worrisome is the numbness in my right foot. My big toe and the adjacent toe are very painful, the whole foot feels numb. The right foot is, temperature wise, hot whereas my left foot is cold. I have also noticed red bumps on the top of my right foot.
i

This is curious, Harvi. It could be a reaction to the treatment--possibly a kind of allergy. Those red bumps sound interesting in this regard. Or it could be part of the disease progression. Does the Wegs doctor know about this? Let us know what the CT scan shows.

Al

[kulharv]

Hi Al,

CT scan for my lower back was fine. I'm having a bone scan tomorrow and will let you know. Also am trying to get into see my Rhuemy tomorrow to discuss the new problem. My rheumy is awesome and this has been confirmed everytime I end up in the ER and they ask who my specialist and when they tell me they have nothing but praise for his expertise, knowledge and his quick reaction to everything that is going on.

I will keep you posted.

Thanks.

Harvi

[drz]

RTX can take awhile to gets Wegs under control so maybe relief will happen soon if it is Wegs related. If it is side effect of treatment they also tend to disappear over time. Hope things get better for you soon as I remember the foot pain swelling too.

[Al]

Hi Al,

CT scan for my lower back was fine. I'm having a bone scan tomorrow and will let you know. Also am trying to get into see my Rhuemy tomorrow to discuss the new problem. My rheumy is awesome and this has been confirmed everytime I end up in the ER and they ask who my specialist and when they tell me they have nothing but praise for his expertise, knowledge and his quick reaction to everything that is going on.


Great. It helps to have a medic who is with you. The bone density scan is useful to determine how nasty the prednisone is on your system. I try to counteract the effects (so far, successfully) by doing resistance training (lifting weights) regularly.

Al

[Sangye]

Harvi, why on earth did your doc do a CT to assess the discs? The MRI is the diagnostic method of choice for that. Discs don't show well on CT, and it exposes you to high radiation.

Also, a clear MRI or CT doesn't rule out low back problems causing your symptoms. Unfortunately (and surprisingly) most MDs are truly pathetic at evaluating the spine. They just don't know the neurology and anatomy well. I don't know why-- surely they learned it in school!

I suggest you see a chiropractor for a proper evaluation. S/he can tell if you have something they can treat, or if it looks more like Wegs-induced neuropathy.

[kulharv]

Hi everyone,

Thanks for getting back to me with info. The CT scan was due to pain shooting from my butt to the foot and they were thinking it could be the sciatic nerve, it wasn't.

The pain has however increased from my foot to half way up my leg and the red bumps (shingles????) have also started appearing on my lower leg whereas they were just on the top of my foot.

I'm seeing my rheumy tomorrow and will be asking for a referral to a neurologist. I can only get a few hours of slightly reduced pain with percacet.

I'm hoping that my rheumy has some answers for me tomorrow as this all started aftger my 4th RTX treatment.

I'll let you know what the doc says tomorrow.

Thank you everyone for your advise! It is greatly appreciated!

[Dirty Don]

Hi Harvi, I have numbness/tingling from my left shin down across the top of my left foot and through the large toe. What little pain I do have in that foot is a twinging across the top of the foot...have no idea what that is related to at this point. WG doc (Mayo-Phx) seemed to think it's a symptom of the WG. Makes sense at this time. I don't have the 'shingles' on my leg, but I did have them in the form of blood blisters on my hands and jawline. Went away once I was on prednisone. Definitely get someone versed in WG to get a look at this...you have many symptoms that need to be taken care of soon. My 'blisters' started, blood in lungs, and joint pain for no apparent reason all happened within 2 weeks before I ended up in the hospital...best of luck to you...ask many questions!!!

[kulharv]

dirty don,

I just got out of the hospital, 3 weeks ago, and was there for 11 days. My lungs had filled up with blood. Joint pain is how my whole ordeal started 2 yrs ago and my diagnosis last year. The numbness and 'shingles' started a day or so after my last RTX treatment.

The big toe, top of my foot, joint on top connecting foot to leg and now the lower part of my leg are very painful and majority is numb. The blisters would be what looks like a rash or shingles. I have a feeling that this could be a reaction the RTX. I will find out what my specialist thinks tomorrow. I am also scheduled for a bone scan on Wednesday. My prednisone dose is slowly being tapered down and am currently on 30 mg per day. Plus now I have a 2 different, very strong, painkilllers to help me deal with the foot an leg pain.

Does it get easier? Frustrated, extremely frustrated right now!:angry:

[ScreaminMeanie]

I have the pain and numbness in my feet and legs, too. Mine is confirmed as peripheral neuropathy. Do you have swelling with yours also? I had major swelling before I was dx'ed. Since the dx and treatment, the swelling is gone, but I still have the pain and numbness. We know it's nerve pain and not from inflammation, because ibuprofen doesn't knock it down at all, while gabapentin and vicodin knock it right out. I don't know what to tell you, except to get with your rheumy and press on until you find an answer. Good luck and keep us posted.

[Red]

I to have numbness and pain and swelling in both feet .Mine too is confirmed as peripheral neuropathy ,gabapentin helped for pain but took 3 week to get the full efect my pain was so bad i tried everything and gabapentin was the ticket been on it for 9 months next month going to stop and see what happens.

[Hal]

Hello Harvi,

When I got sick, just before I went to the ER because of the intense pain in my legs, I too was getting a lot of red spots in my legs. The doctors did not know what they were, but in hindsight I believe they were blood clots. They went into my lungs as well.

I have a lot of nerve damage in both feet and some motor nerves in the legs. Like you, some areas are hyper sensitive. Even a bed sheet brushing against those areas would cause intense pain. Yet most of the feet became numb. Because of the pain I could not even walk, so I deteriorated amazingly quickly, to the point that this time last year I needed a wheelchair to get from the car to the neurologists office in the hospital. The doctors prescribed Lyrica for me, which is a $2 a pill nerve pain killer. I continue to take those while waiting for my nerves to get sorted out. If I stop taking the pain killers I simply will not be able to walk at the moment. So, you are not alone there! I never took RTX but took Cytoxan instead for six months.

I would ask you doctors if those spots might be blood clots, and if you should take blood thinners for a spell until you stabilize.

That was my sort-of-similar experience. Good luck!

Hal.

[ScreaminMeanie]

I feel so lucky. I came close to not being able to walk right after I was dx'ed. The mtx did stop the progression of the PN, so I can't hate mtx too much! I only take gabapentin once or twice a week, at bedtime so I can sleep when the pain is too much. I also have an Rx for vicoprofen. I break the 7.5mg tabs in half and take one a few days a week. They don't knock me out so I can take them during the day, although of course I don't take them at work. I usually take them right after I get home from work.

[kulharv]

Hal, Red and Screamin Meanie,

THANK YOU! This information helps me immensely. I am seeing my rheumy today at 2:45 and will bring up both blood clots and periphal neurpopathy to him for further checking.

I guess the gabapentin will take a bit to kick in as right now it isnt doing anything for me. Only relief if from percacet and that is for like 2 hrs and the it starts to wear off.

Is PN part of WG or is it something different all together?

Once again thanks for all the info!

Muahhhh and a great big hug to all of you!

[Sangye]

Hang in there, Harvi. It sounds like shingles to me. Rtx greatly suppresses the immune system and dormant chicken pox virus can become active. I hope you get good answers today and relief of your pain!

[ScreaminMeanie]

What Sangye said. And yes, PN is a common symptom of WG. Good luck with your rheumy this afternoon.

Mine actually got worse for a few weeks after I started treatment (pred, mtx initially) until I developed foot drop. Luckily, that function returned, but most of both of my feet is still numb. I can live with that, but when the nerves get active, it is no fun at all. My problem is, right now I can't tell if the PN is getting worse or better!

My PN was actually the final step of my diagnosis. Prior to the foot drop, I had such nebulous symptoms that, even though we suspected WG because I'd had it before, we still weren't sure. The foot drop confirmed the PN, so the diagnosis was also confirmed.

[Dirty Don]

Best of luck today Harvi...ask lots of questions, leave no stones unturned. Armed with more info is good and WG is so weird, you need all you can gather!

[kulharv]

Hi Everyone,

First of all thanks to everyone for getting back to. I feel a better hearing from everyone.

Rheumy confirmed that it was |PN, no blood clots or shingles. He increased my prednisone to 60 mg, I had just tapered down to 30!
Also the gabapentin was increased to a max of 2400 mg per day up to 3x per day. I was told that the gabapentin will work and the dose I had originally from my GP was very low.

I was told that it could take a few months to clear up. The swelling is not too bad but the numbness, tingling and the burning sensation are driving me insane. Not to mention now that I have increased my prednisone dose and willl split up am an pm any chance of sleep that I had with the percacet will probably be gone.

Anyways no more whining, done enough the last week! Tomorrow my bone scan so a very early morning.

Good night everyone and hope that everyone is doing well as can be!!
:hug1::sleep:

[Sangye]

I'm glad your doctor figured it out. Why are you splitting up the pred dose? That's not necessary. High doses of pred stay in the body long enough to take it once a day-- in the morning.

[kulharv]

Good Morning Sangye,

I don't why he does either than he says it is a high dose and would like me to take 50/50 am and pm. I don't mind the am but the pm one keeps me up and i think that it lowers the effect of the gabapentin and percacet as they help me sleep!

Had my bone density scan yesterday and when looking at the monitor there were bright marks where all my sensitivity is on my foot but won't know for about 2 weeks the result.

The numbness is driving me crazy and not to mention that the 'rash' like think is moving up my leg now. Oh well, take it as it comes!

Thanks for getting back to me Sangye and everyone else, it makes me feel so much better!

Hope you're doing well.

Have a fabulous day!

[elephant]

What did the doctor think of the "rash thing climbing up your leg?"

[kulharv]

Elephant,

The rash was periphal neuropathy and said that the rash is not blood clots. If it was a clot my leg would have been swollen and there wasn't any swelling. The rash is gone up my leg and they look like little blisters but under the skin. If any thing touches the rash area the pain is unbearable.

The dose of gabatenin was increased from 200mg to 2400 mg per day and prednisone up to 60mg now, which I am not happy about but I have now choice. Hopefully I will be down in a few months.

I won't have tghe result of the bone denisty scan for a couple of weeks.

I will just have to wait and see!

Take care and thanks for caring.

[Sangye]

I love your avatar, Harvi!! :thumbsup:

[kulharv]

Sangye,

thanks, pic is from my son's wedding reception and then i got extremely sick with phenumonia and went downhill from there! So i thought a smiling pic would be the best.

Thanks! harvi

[Sangye]

It must have been a great wedding. You are beautiful!

[ShaniBooT]

Hi Harvi,
My husband Dean has numbness on both feet and the sides of his hands. It is on the outer side of his feet and has a burning feeling too. On his hands it is numb on outer side of each hand. No burning on hands. He can't pick up his heal's on his feet to work so he will stumble some. I think that is called drop foot and it is from losing so much weight to fast. But we don't know what the numbness is on his hands and feet. Dean also went through RTX for 4 weeks. It has been about a month now. Dean has an appointment with the Neurologist on Monday and I will asked him what this might be.
Barbara & Dean

[Al]

My husband Dean has numbness on both feet and the sides of his hands. It is on the outer side of his feet and has a burning feeling too. On his hands it is numb on outer side of each hand. No burning on hands. He can't pick up his heal's on his feet to work so he will stumble some. I think that is called drop foot and it is from losing so much weight to fast. But we don't know what the numbness is on his hands and feet. Dean also went through RTX for 4 weeks. It has been about a month now. Dean has an appointment with the Neurologist on Monday and I will asked him what this might be.

Barbara--Dean's neuropathy may or may not be related to the WG, but I'm guessing that it is. Wegener's often involves the nerves, though neurologists often are, in my experience, unfamiliar with this aspect. The stumbling might also be related, though it could be associated with the treatment. Good luck with this; let us know what the neurologist has to say!

Al

[kulharv]

Barb & Dean,

I can't imagine having this feeling in both your hand and feet, I have it just in one foot and can't handle it.

My rheumotologist has told me it is neuropathy and can take up a a few months to clear up. At this time he said that he doesn't know if it is part of WG or just a new thing that has appeared. My meds are 2400 mg of gabapentin and this apparently doesn't kick in right away. This is to help with the nerve problem as my foot has become very sensitive to touch. Also I have been put on percacet to deal with pain. The are both very strong meds and make you drowsy, in fact taken together, I was finally able to get a few hours of sleep.

I hope that you get good treatment and advice from your neurologist.

Good luck!

[kulharv]

Sangye,

Thank you once again. It was a beautiful wedding and they are expecting their first baby in March, 2012. Something for me to look forward to.

Thanks.

[Al]

My meds are 2400 mg of gabapentin and this apparently doesn't kick in right away. This is to help with the nerve problem as my foot has become very sensitive to touch.

Harvi--this is a lot of gabapentin. I hope your nephrologist is on top of this!

Al

[kulharv]

Al,

I don't have a nephrologist, yet. I haven't taken the full 2400 yet but was working my way up to it. I haven't read up on the side effects of it but I guess I should. It doesn't seem to have done what it should as I was told it would slowly work.

Now I am worried. I will check with the dr on Monday.

Thanks so much!!

[pberggren1]

Gabapentin Shmabapentin............lol

I have never heard of this one. Or maybe I did and I forget. Anyway I blame it on the pred as I do most things......lol

[Al]

Gabapentin Shmabapentin............lol

I have never heard of this one. Or maybe I did and I forget. Anyway I blame it on the pred as I do most things......lol

Good to hear from you, Phil. I was beginning to think you were at a bowling tournament or something....

Gabapentin (brand name: Neurontin) is a favorite of neurologists, though some other doctors take a, shall we say, jaundiced view of it.

Al

[pberggren1]

I did have some tingling in my feet earlier this year but it went away. Also at the same time I had ingrown big toe nails. The left one died. No funeral though, just a small ceremony.

[Al]

Al,

I don't have a nephrologist, yet. I haven't taken the full 2400 yet but was working my way up to it. I haven't read up on the side effects of it but I guess I should. It doesn't seem to have done what it should as I was told it would slowly work.

Now I am worried. I will check with the dr on Monday.

Thanks so much!!

Harvi--don't worry, so long as your kidneys are doing fine. But many drugs can be hard on stressed kidneys, especially at high doses. With most matters WG, it is useful to key an eye on the kidneys.

Al

[kulharv]

Hi Phil n Al,

I was told by my doc that the gabapentin was used for seizures and nerve pain.

No seizures but nerve pain yes and it was pretty painful.

My foot isn't as sensitive to touch once I've taken the med but the numbness just doesn't go away. I don't know which one is worse! The numbness is is the whole foot and it seems to be going up my leg now too!

Thanks and good nite for now. Its past midnight and seems that the drugs are kicking in so I might as well get a few hours of sleep.

Take care guys!

[ShaniBooT]

Dean doesn't have the pain you are having. Most of all is is the numbness that bother's him the most. The burning he says has let up a lot the last few days. We feel bad for you as you are suffering so much. Shingles is very bad if that is what you have. Sometimes it takes up to a year to get over Shingles if that is what it is. Dean doesn't have Shingles. We went down to get a Shingles shot and I got to get it but Dean couldn't because of his Wegs. So, we were told what to look for.
Our Prayers are with you and hope you will soon have relief from this bad pain.
Barbara & Dean

[kulharv]

Al,

so far all my kidney tests have been fine and my doc orders blood work once a month.

Thanks for the quick replies.

Good nite for now!

[Al]

Thanks and good nite for now. Its past midnight and seems that the drugs are kicking in so I might as well get a few hours of sleep.

Take care guys!

Good night, Harvi. Good Night, Phil. Sleep tightly. Tomorrow is another day. Still!

Al

[kulharv]

Dean doesn't have the pain you are having. Most of all is is the numbness that bother's him the most. The burning he says has let up a lot the last few days. We feel bad for you as you are suffering so much. Shingles is very bad if that is what you have. Sometimes it takes up to a year to get over Shingles if that is what it is. Dean doesn't have Shingles. We went down to get a Shingles shot and I got to get it but Dean couldn't because of his Wegs. So, we were told what to look for.
Our Prayers are with you and hope you will soon have relief from this bad pain.
Barbara & Dean

Barb & Dean,

Glad that Dean doesn't have the burn feeling as it is horrible. The pain does lessen with the percacet but the numbness just doesn't go away. The red rash thing is apparently the nerves and not shingles, thank god. I was told that it if was shingles it should be all over and not just isolated to the top of my foot. the red rash thing has gone up my leg as well and I am keeping an eye on it to make sure that it doesn't spread in further.

Thank you for keeping in you your prayers as your are in mine.
All the best to both of you!

Good nite for now.

[elephant]

Actually I was googling wegeners disease yesterday, for fun and one of the symptoms of wegeners was neuropathy. Sometimes some of the medications can cause neuropathy because the medicines are toxic and can cause nerve damage. It also depends how long we have been on these toxic drugs and indivuality variables that come in place. So many times its a wait and see approach to see what the real cause it.

[Al]

The red rash thing is apparently the nerves and not shingles, thank god. I was told that it if was shingles it should be all over and not just isolated to the top of my foot.

Shingles can bring about neuropathy (I still have no surface feeling across much of my back and belly, yet the residual pains, though rare now, can still be incredibly sharp). And it is often widespread though, interestingly, usually limited to the left or right hemisphere of the body. For being unlucky enough to get shingles, I was incredibly lucky in that I didn't get it in the face, eyes, etc. Shingles is bad news, and those with a suppressed immune system (i.e., pretty much all of us on this forum), are at risk, regardless of whether we have had the inoculation, because nearly all of us carry the latent varicella zoster virus. When the cops are not around, it doesn;t take long for the bad guys to figure it out. There are ways to mitigate the effects, but they must be employed within 24 hours, so any hint of shingles must be reported immediately.

Al

[kulharv]

Hi Al and Elephant,

I was just reading up on WG as well and saw the same thing abouit neuropathy. Thank god, no shingles but the red rash is annoying and wherever the rash is that is where it is very sensitive and even a bit of a breeze on the area is extremely painful. At this point, I don't know which is worse, the numbness or the pain. The numbness is all throughout my right foot and seems like it is going halfway up my leg whereas the pain is mainly in my leg and bg toe. Making me lose a lot of sleep and I keep popping pills that don't seem to be doing anything!!!!!!

Anyways, I guess this is what i will have to deal with for a while so I will just suck it up and stop whining!

Thanks for listening!

[Al]

I guess this is what i will have to deal with for a while so I will just suck it up and stop whining!


Reading is good, Harvi, though the best material can be hard, because it sounds like a medical school textbook (Where did these guys learn to write, anyway...?) As for whining, you are allowed to do that here. And even encouraged! We all do that. In exchange, we allow our forum-mates permission to nag us to see the right doctors, be assertive, and all those good things we might not do on our own. It's a family, you know.

Al

[delorisdoe]

I'm not allowed whining. My friends chris and phil said so.

[Al]

I'm not allowed whining. My friends chris and phil said so.

Just that they know what you were going to say without your actually saying it...?

Al

[delorisdoe]

nah...they are just mean.
:razz:

[elephant]

Harvi, wish there was a medication that would take care of your numbness in pain. How is your circulation in your feet? Do your toes turn blue or they pink?

[ScreaminMeanie]

I've noticed that my feet also get very cold, both in feeling and to the touch, when the pain/numbness is most noticeable. I just wish I could tell if it was getting better or worse!

[pberggren1]

Watch out Leigh. Batman is watching..........lol

[kulharv]

Elephant, Al and Delorisdoe,

Elephant: Circulation is fine and toes are pink. Just numb and painful.

Al and Delorisdoe: It feels good to whine specially if there are friends out there understand where it coming from.

I appreciate my new family and can't tell you how much its meant to be a part of it!

Bless all of you!

[Al]

Elephant, Al and Delorisdoe,

Elephant: Circulation is fine and toes are pink. Just numb and painful.

Al and Delorisdoe: It feels good to whine specially if there are friends out there understand where it coming from.

I appreciate my new family and can't tell you how much its meant to be a part of it!

Bless all of you!

...Ad we are glad and enriched to have you in our family, Harvi! Too bad it is necessary, though. But we would still love you even if you didn't have WG!

Okay, so your toes and such are fine. That is encouraging, even though the pain remains. This means that though the nerves may have incurred some damage (at either the local level or further up into the central nervous system, the tissue itself is doing okay and should function perfectly well on an indefinite basis. This knowledge does not ease the pain, of course, so go ahead and "whine" as much as you need--we'll listen! When you do find a compatible Wegs specialist, be sure he or she knows all the details.

Al

[kulharv]

Al,

Thanks. Today was one of those days that I wanted to feel sorry for myself and whine as well as cry the whole day.
It is comforting talking with everyone in the forum.
I can't quite put an expression to it as to how it makes me feel.
But I am also enriched to have made new friends thru the forum.

Once again thanks!
Have a good nite. I believe that you are in the same time zone as myself being in the Pacific NorthWEst

[Al]

Al,

Thanks. Today was one of those days that I wanted to feel sorry for myself and whine as well as cry the whole day.
It is comforting talking with everyone in the forum.
I can't quite put an expression to it as to how it makes me feel.
But I am also enriched to have made new friends thru the forum.

Once again thanks!
Have a good nite. I believe that you are in the same time zone as myself being in the Pacific NorthWEst

Yes, Harvi. I am on the other side of the border. Some days are "cry" days. It is hard to explain even to your closest loved ones how all-consuming this thing can be. Yet that's not quite right. I still feel like my best and most productive days are ahead of me, even while living, breathing, and dreaming this stuff. It is lovely to know that there are others with similar, if not identical thoughts about this.

Tomorrow I'm off to visit the opthamologist. These prednisone-induced cataracts are a real bother! Paraphrasing the tuck-in when my kids were small: Nighty-nightly, sleep tightly, don't let the...ANCA bitely...!

Al

[ShaniBooT]

Dean was in the hospital over night. He got up Friday morning and was too sick to get out of bed. His head and eyes hurt him and he had a very bad stomachache and he felt nauseated.
I told him he needed to get up and eat something so he could take his medicine. I was thinking that could be the problem as I let him sleep until late morning. He finely got up and took 4 bits and threw up. It looked really dark, like maybe blood in it. He just laid on the floor and finely went and laid on the bed again. I asked him if I should call our doctor he said no that it would go away. Well, I called the doctor and they said to go to emergency right away. I put some of the throw up in a bottle and took it with me. I gave them the bottle of throw up and the nurse said they wouldn't need it to throw it away. I put it in my pocket and when the doctor came in I gave it to her. She said right away to check it out. They found blood in it and the doctor said that was very smart of me. I hope the nurse learned something from that. I didn't say any thing to embarrass her. Dean had a CT and they put him in the hospital for Friday night, and put him on a lot of medicine and infusion. He came home late afternoon yesterday (Sat.). They feel it is the prednisone that is causing the bleeding. They were going to put a camera down his throat, but decided he should see his doctor. His doctor is out of town on vacation and so he has a stand in doctor, so that is who we will be seeing tomorrow morning early. I'm off to bed.
Barbara & Dean

[Al]

Dean was in the hospital over night. He got up Friday morning and was too sick to get out of bed. His head and eyes hurt him and he had a very bad stomachache and he felt nauseated.
I told him he needed to get up and eat something so he could take his medicine. I was thinking that could be the problem as I let him sleep until late morning. He finely got up and took 4 bits and threw up. It looked really dark, like maybe blood in it. He just laid on the floor and finely went and laid on the bed again. I asked him if I should call our doctor he said no that it would go away. Well, I called the doctor and they said to go to emergency right away. I put some of the throw up in a bottle and took it with me. I gave them the bottle of throw up and the nurse said they wouldn't need it to throw it away. I put it in my pocket and when the doctor came in I gave it to her. She said right away to check it out. They found blood in it and the doctor said that was very smart of me. I hope the nurse learned something from that. I didn't say any thing to embarrass her. Dean had a CT and they put him in the hospital for Friday night, and put him on a lot of medicine and infusion. He came home late afternoon yesterday (Sat.). They feel it is the prednisone that is causing the bleeding. They were going to put a camera down his throat, but decided he should see his doctor. His doctor is out of town on vacation and so he has a stand in doctor, so that is who we will be seeing tomorrow morning early. I'm off to bed.
Barbara & Dean

I am so hear about this turn of events, Barbara. You did well to make sure Dean got to the emergency room, and you did well to "preserve the evidence". I know it is hard to think straight at those times, but you did everything right. Somehow it always seems that the doctor is away at the crucial times. Please let us know how this works out.

Al

[watersedge]

Hi Harvi. Have just been reading your story. You seem so nice and genuine, I am sorry for all the pain and discomfort you are feeling and hope you can get some relief soon. Best wishes.

Barbara, I hope your husband Dean is doing o.k. and is feeling better.

[elephant]

Sorry to hear about Dean, and glad you got him to the hospital ASAP! Keep us updated.

[kulharv]

Barb,


sorry to hear about Dean's situation.
very smart to get him to the hospital and take a sample.

When I was coughing and throwing up blood they asked me a sample and of course when I got to the hospital I couldn't produce anything for them . Goodnthinking on your part.

I do hope that he is feeling somewhat better and you get to see a doctor soon\2

alll the best

[kulharv]

watersledge,

Thank you!

I do wish the pain and numbness would go away! I'm noticing today that the color of my foot is different than the other one. I will have to keep an eye on this. another thing to add to the list!

I wonder why we have stress! the cycle just keeps on going with no end in sight!

sorry to be whining......yet again!

time to get some shut eye before the pred kicks in and cancels out my other med that helps me sleep

take care

[Red]

Hi Kulharv i also had trouble sleeping my Dr. gave me nortriptlyne for foot pain and sleep it worked .

[Al]

I wonder why we have stress! the cycle just keeps on going with no end in sight!

....time to get some shut eye before the pred kicks in and cancels out my other med that helps me sleep


Sometimes those stress-inducing anxieties are free-floating, in which case meds might make sleep a little easier. But often, I think, there are very real and present concerns that will never go away just because the brain is drugged into ignoring them. Prednisone, in my experience, just makes it difficult to say, "Okay, but it would be better to worry about that issue in the morning." And then you start to worry about worrying too much...

Any way out of the cycle? Dunno about the rest of you, but for me, it helps to keep a notebook by the bed, and, in the middle of the night, sneak into the bathroom and scribble a few paragraphs. Nevermind that much of it was, by morning's early night, illegible. It helped just to write it down.

Al

[delorisdoe]

Nevermind that much of it was, by morning's early night, illegible. It helped just to write it down.

Al

Omg this made me laugh out loud. I would wake up wide awake in the middle of the night and do a staff work schedule. I would rip off 2 or 3 weeks worth and then go to sleep. The next morning would be good for a laugh. They were usualy completely unusable.

[Al]

Omg this made me laugh out loud. I would wake up wide awake in the middle of the night and do a staff work schedule. I would rip off 2 or 3 weeks worth and then go to sleep. The next morning would be good for a laugh. They were usualy completely unusable.

Har! Convergent evolution (of a solution) at work!

Al

[watersedge]

You make me laugh Leigh and I just read your bit about the bird hitting you over the head! You remind me of my sister, she has the same sense of humour as you!

[ShaniBooT]

Dean was fine on Sunday, but yesterday on Monday we had an appointment with Dr. Cooper who is a Neuologist. Dean wasn't feeling up to par, but was doing OK. We had to see the doctor that is taking our reg doctors place until he gets back on Thursday. So, I went to that office first to see if they could see Dean, they said to go over to the the other appointment and they would see what they could do. Dean's Neuologist liked what he saw when Dean walked for him and his feet seemed better and his hands and he was having no burning feeling. The numbness will not go away he thinks. He told us that we didn't need to make an appointment until we needed it. That was good news for that one.

Went back over to the other doctor and they didn't think they could get Dean in. The doctor at the hospital had wanted Dean to see his doctor as soon as possible. They said they didn't think it was his wegs causing it. I dissagreed because this same thing happened before when he went to his reg Rheumatology doctor just before he started the Rituxan. He then gave Dean a prednisone shot and he felt better until he started his Rituxan treatments. The new doctor finely came out and talked with us, because I wasn't leaving to go home. She said that she had to go over all of the information on Dean and look at his blood work and CT scan before she could talk to us that she was very busy and hehind. I believed her and she told us to go home and she would call me that night after she went over his records. I understood that she was very busy. I just was so worried about Dean. She called me at 7:30 that evening after going through all of his paper work and CT scan. She felt because they found blood in his throw up that it wasn't the Wegs. causing it if she gave Dean more prednisone that it might be that causing the bleeding. Also Dean had started a new medicine called Azathioprine (Imuran). She wanted him to stop that until he saw his doctor. We made an appointment for Thrusday at 2:30 PM and we went home. Dean felt a little better last night.

This morning he he had another headache and eye pain. We had an appointment with our Dermatologist for our yearly check up. By the time we got there Dean was really sick again. We went into our Dermatologist that we have known for sometime. She right away checked Dean out for skin cancer and all that good stuff. She made him go and lay down in one of the rooms and turned the light off while she checked me over. Or Dermatologist said that I should call the doctor again, that Dean was very sick. He threw up again, but this time no blood it looked like. So she let me stay in the room with Dean to call our doctors again. I had to wait until the doctor got through with her patient before she could talk with us, so she would call back when she could. I then called our other reg doctor that is part of the team at the same building and asked him what to do. He said that I need to wait for the other doctor to call back. I waited for almost 30 minutes and then she called back, by then Dean was feeling a little better after throwing up, but still had the bad headache and hurting eyes. The reason I was waiting at the Derm office was because it was real close to the hospital and if I had to take him to emergency I could do it in 10 minutes. I live an hour or more away, depending on the traffic. Seattle is a very big city and the freeways are so crowded and I live outside of Auburn. Dean is feeling a little better tonight and hope he will be OK tomorrow and the we will see the doctor. It has been a very depressing day for us.

Harvi, I'm so new to this site that I didn't know where to write to, so when I clicked on this post I wrote about Dean's problems. I hope your pain is letting up some what and glad to hear it isn't Shingles. Sorry for this long post, I just don't know how to write short I guess. I have been so upset today and hope tomorrow will be better for all.

Barbara & Dean

[Al]

Dean was fine on Sunday, but yesterday on Monday we had an appointment with Dr. Cooper who is a Neuologist. Dean wasn't feeling up to par, but was doing OK. We had to see the doctor that is taking our reg doctors place until he gets back on Thursday. So, I went to that office first to see if they could see Dean, they said to go over to the the other appointment and they would see what they could do. Dean's Neuologist liked what he saw when Dean walked for him and his feet seemed better and his hands and he was having no burning feeling. The numbness will not go away he thinks. He told us that we didn't need to make an appointment until we needed it. That was good news for that one. ....

Barbara, this report was superb, even if it was painful for you to write it. Azathioprine, in some patients, can cause bad digestive distress. One option is CellCept, which might be more tolerable. What hospital are you in? There may be some easier ways of dealing with your stresses.

Al

[ShaniBooT]

The Polyclinc is where we go for all of our appointments and the Swedish Hospital is where they like us to go, because all of our charts, x-rays and things like that can be seen by both buildings. Tomorrow we will be seeing Dean's Rheumatology doctor. Today Dean is doing better he doesn't have the bad headache or eye pain, but is very tried. Be glad to see the doctor tomorrow to see just what we need to do for Dean. It is so scary for both of us. Being sick is not a one person deal, it is a whole family deal. Our children and grandchildren are in all of this too. They are all very upset too and helpful to us.
Thank you Al for knowing how much stress we all have with this bad disease. I Pray for us all who have it and have to live with someone that has it. Thank you, everyone who has responded.

Barbara & Dean

[ShaniBooT]

Harvi,

How are you doing today with your pain? I was thinking of you today. Dean is better today although he is very tired. and he will go to see his reg doctor tomorrow.

Have a up lifting day,
Barbara & Dean

[kulharv]

Hi Barbara & Dean,

Sorry of the late reply. Haven't been th best so haven't have a chance to come on the computer as concentration has been extremely poor.

I'm glad to har that Dean is doing well!

As for me the pain has not subsided and in fact has gotten worse. I have been given Hydromorphone to try to control the pain but hat just kind of gives me a few hours of sleep and when I wake up the pain is still there. I have just recently found out that I have many hairline fractures on my foot which has contributed to pain.

I am coping and know that with time everything will be fine. In the meantime I will have to keep popping those pills.

Take care and hope that everything remains positive for both of you!

[chrisTIn@]

Wow, Barbara and Harvi! Today I read the entire thread, which I hadn't seen before, but my attention was drawn by the title of the thread. I also have slight numbness in one foot (the right one) and skin rash on one toe and the palms of my hand, but not nearly as much pain and discomfort as you report!

I feel sorry for you, both Harvi and Dean, who suffer much pain and have little time to rest, due to the pain, which is tiring itself anyway. It's no fun to be a 'Weggie' sometimes! I sure hope your doctors will figure out soon what's the best treatment for now!!!

Barbara! You're being a great help to your husband, amazing!
If you want you can start a new thread, it's not so difficult to figure out, but I understand you have little time left when you have to take care of your husband so much...

Again, good luck to all of you. Take care, hold on!

[Dirty Don]

[/QUOTE]Any way out of the cycle? Dunno about the rest of you, but for me, it helps to keep a notebook by the bed[QUOTE]

Journals, reviews, essays, poems, they all help a lot, even if you're not into writing...it does help as it's a measuring stick. But, Lexapro works best if you're stressed!! LOL

[Al]

Haven't been th best so haven't have a chance to come on the computer as concentration has been extremely poor....I am coping and know that with time everything will be fine. In the meantime I will have to keep popping those pills.

Hi Harvi--it is nice to hear from you, though I am sad that you still have your pains. I will confess that I was a little concerned about you. As it happens, those worries were justified. Your foot fractures a problem. You must keep moving to feel better, but you can't move so well now without feeling even worse. And, the prednisone will exacerbate these problems. Have you seen a podiatrist? A good one can suggest ways to walk, stretching, and alternate footware that might relieve the stress on the poor things. At one time my feet were giving me much grief. Now they are fine, after I visited the podiatrist and a really good shoe fitter.

Al

[ShaniBooT]

Hi Harvi, I'm so sad that you are having so much pain still. I know you are coping with it, but it still is very hard to have pain all the time. Having all those fractures doesn't sound good. Does the Wegs cause the hairline fractures? Please take your time to anwser as I know it is hard to get online when feeling so bad. Dean is doing good right now. Dean still has numbness on the sides of his hands and feet, but no pain right now. I wish that for you with all my heart.

Barbara and Dean

[ShaniBooT]

Hi Chris, Dean is a lot better as of today. I hope your pain doesn't get any worse. Have you seen a Neurologist?

To tell you the truth I'm not to sure about how to start a thread. I'm so new here. I have been so busy with going to doctor's for Dedan and I. I have been down myself with pneumonia. Been very tired, but better now. Don't like to complain about my problems as they are small compared to everyone else here.

Barbara and Dean

[Al]

To tell you the truth I'm not to sure about how to start a thread. I'm so new here. I have been so busy with going to doctor's for Dedan and I. I have been down myself with pneumonia. Been very tired, but better now. Don't like to complain about my problems as they are small compared to everyone else here.

Barbara--no one here has "small" problems. And you are carrying a heavy load. So you need and deserve to "complain". We are here for you, and proud of you. Your pneumonia surely is made worse because of all your other worries. I hope you have someone you can call on for help. You do need to rest when you can.

You can start a new thread by going to any forum title (like "Medications"). Near the top of the page is a button to click on that says "Start New Thread", or something like that. Then you have to name your thread, like "News of Dean", and then write your message and hit "submit". That's all there is to it!

Al

[delorisdoe]

Hi Chris, Dean is a lot better as of today. I hope your pain doesn't get any worse. Have you seen a Neurologist?

To tell you the truth I'm not to sure about how to start a thread. I'm so new here. I have been so busy with going to doctor's for Dedan and I. I have been down myself with pneumonia. Been very tired, but better now. Don't like to complain about my problems as they are small compared to everyone else here.

Barbara and Dean

I have had pneumonia several times and it knocks me on my butt everytime. Id never call pneumonia a small problem.

[ShaniBooT]

Thanks Al, I think I can start a new Thread after you explained how to do it. I have had pneumonia for about a month. Went to doctor when Dean went to his, stayed in bed when we didn't have anything going. I'm finely feeling a little better now and not so tired. Took it easy today. I have weak lungs and I think going to the hospital and Clinic's with Dean made for a lot of people having all kinds of things and I got it. It isn't fun to be sick and I know how you all must feel when you are in a flare up. Thanks goodness Dean is feeling good this week.

Leigh I know that pneumonia makes you very weak thanks for pointing it out.

Barbara and Dean

[jola57]

After getting the foot drop and nerve damage, I just found out that my neuropathy will be permanent. It seems if the nerves do not regenerate within 2 years they are shot so mine, after 4 years, are gone, done, kaput. I am still following up with getting at least my left foot either fused in ankle or get the tendons repositioned to get back my arch. I can live with the neuropathy but not the constant ankle pain. Think of walking on a twisted ankle for 4 and 1/2 years, ughh.
Harvi don't give up, talk to a podiatrist and neurologist.

[Sangye]

Jolanta, I'm so sorry about that. :sad:

Barbara, I've had pneumonia many times and it is no picnic. Really saps your strength.

[ShaniBooT]

Jolanta, I'm sorry you have to go through so much and that your neuropathy will be permanent. Sorry about the pain you have. Wish there was something that could take it away for good.

Barbara and Dean

[ScreaminMeanie]

After getting the foot drop and nerve damage, I just found out that my neuropathy will be permanent. It seems if the nerves do not regenerate within 2 years they are shot so mine, after 4 years, are gone, done, kaput. I am still following up with getting at least my left foot either fused in ankle or get the tendons repositioned to get back my arch. I can live with the neuropathy but not the constant ankle pain. Think of walking on a twisted ankle for 4 and 1/2 years, ughh.
Harvi don't give up, talk to a podiatrist and neurologist.

Ugh. That means I've only got until April for mine to regenerate (that will be 2 years from when I first developed the neuropathy). It's not looking good. I agree - the neuropathy is annoying (and my feet get cold so easily now), but the constant pain is simply not fun.

[pberggren1]

Ugh. That means I've only got until April for mine to regenerate (that will be 2 years from when I first developed the neuropathy). It's not looking good. I agree - the neuropathy is annoying (and my feet get cold so easily now), but the constant pain is simply not fun.

But everyone is different so you may get yours back now or many years later or never. One can never tell. I hope at least the pain lets up for you.

[Dirty Don]

But everyone is different so you may get yours back now or many years later or never.

I've witnessed numerous nerve injuries...some come back, some never, some are minor, some are debilitating. I've seen a football player for a major university go down with a stretched nerve in his shoulder, years later the feeling came back, but never the full usage - he golfs and lives a full career oriented life! Coached one player who took on a player larger than him head on, he never recovered in most ways...just exists. Saw one player go down in a simple and safe tackle, he never got up. And, I have seen many 'stingers' and other nerve injuries...most return in or show signs of returning in a year or so...it has more to do with the length of the nerve strands than the severity, outside of being severed. The longer the nerve strand(s) injured, the less likely of returning usage, at least normal use. Time becomes an issue only as the nerves don't react as you would like them to do. At some point, we live with it, because of it, for it, and, most certainly, differently than before...there, I'm done, morning rant is finis!!!!!!!!!!! All have a good day!

PS: I have a dropped left foot, very irritating more than anything else...I have learned to balance on it, and I don't take HIGH steps!! LOL...tripping has become an art form for me!!! LOL

[Al]

...tripping has become an art form for me!!! LOL

(Weren't we talking about geezer tipping a while back?)

[ScreaminMeanie]

Oh gosh, when I had foot drop, I fell down so much they gave me a foot/ankle brace! Luckily, my first few weeks of treatment w/pred and mtx reversed the foot drop, but I got to keep the numbness, tingling, and pain. Not that I'd want to go back to it, but I do recall my foot being pain-free for the first time in months while the foot drop was happening, and me LIKING it. LOL

[Dirty Don]

TRIPPING, not tipping...geez!

[Dirty Don]

I do recall my foot being pain-free for the first time in months while the foot drop was happening, and me LIKING it. LOL

Strange the things/items/ideas/and people we Weggies find our new lives taking us to and what we learn to find pleasures in!! And fun too!! LOL

[KathyB]

Hi Harvi,
Sounds like you have your hands full. I wish you the best with discovering the origin and finding the proper course of treatment. The only thing I can share is the tingles in my hands and feet (to the point of numbness in some areas). They appear to be peripheral nerve issues, though. No rashes or bumps. I guess what I've been learning is how different we all are with WG and it's important to listen to your body and be your own best advocate for your care and treatment. There are also a lot of very knowledgeable folks who share on this website!! Hope all goes well for you very soon.

KB